ACC and Moms-To-Be #4 Story

I received this ACC and Moms-To-Be story from
Carrie and it is truly a privilege to be able to
share it here with you to read.

Thank you very much Carrie for reaching out to
other Moms and Daddies too as you openly share your
very personal ACC story.



ACC in Pregnancy Story

Our older daughter was born with hypoplasia of the corpus callosum. Her name is derived from a
Hebrew name that means “spared by Jehovah.”
This is an account of our experience.

Prenatal Issues

As a 22-year-old, I became pregnant in late
summer of 2002. My husband and I had been married
for just over a year and we were both employed
full-time and were college graduates. We both
manage chronic health conditions—I have asthma.
He has a chronic health condition, and we consider
ourselves to be intelligent, empowered patients
who do their research and demand to have a say in
our care. My OB/GYN was a doctor who had delivered
me as well! I had no risk factors for complications
and was exceedingly careful both before and during
my pregnancy, taking the recommended prenatal
vitamins, eating well, and avoiding hazardous
environments, lunch meat, microwaves, overly-hot
baths, etc.

Our sonogram at 13 weeks looked great. My OB sent
us for a second sonogram at 24 weeks. Although we
did not want to know the gender, he found it to be
a good time to let Mom and Dad get another peek at
the baby and to let him have another set of measurements.
We thought the ultrasound went great and the tech said
nothing amiss that we noticed. We headed upstairs for
my regular appointment.

My OB was greatly concerned by the measurements of
the ventricles in our baby’s brain, which was a
surprise to us. Apparently the tech was not allowed
to disclose any issues. He referred us to a geneticist,
and we had to wait 2 weeks for the appointment because
he was out of the country. My OB’s best guess, having
not been present at the scan, was hydrocephaly.

The geneticist and his residents spent about three
hours doing sonograms. I also had an amnio done to
rule out genetic complications and so that we could
line up a special-needs pediatrician if needed. We
told them that we did not want to know the gender.

He told us that he believed the baby had Agenesis
of the Corpus Callosum (ACC), but that it would not
be anything debilitating, just something about as
difficult to manage as ADHD. The amnio came back
normal, but they did disclose the gender when they
mailed us the results.

We had a repeat sonogram with the geneticist at 30
weeks and he still felt that ACC was the issue.

Preparations for Birth

Given our baby’s brain complications, we met with
several pediatricians and asked each about three
pages of questions. Some blew off the concern. Others
asked me if I had been taking illegal drugs during
the pregnancy. We finally settled on a pediatrician,
who seemed to have a middle-of-the-road approach
while being personable and cautious. We copied her
on all notes from the geneticist and remained in
contact.

We also met with one of the neonatologists at the
hospital. We were impressed with him, and although
we were not able to go in the NICU, we at least felt
fairly comfortable with the situation if it were an
emergency.

We also took the hospital’s childbirth class. A huge
emphasis was placed on natural, induction- and
epidural-free childbirth. Because I was already
planning on this, it was in line with my wishes and
I learned a lot from the class, as did my husband.

I also attended a breastfeeding class. The lactation
consultant is a terrific cheerleader for moms who feel
insecure trying such a huge new thing. I can say that
she is a huge part of why I eventually succeeded in
breastfeeding my daughter—the accomplishment of which
I am most proud. I did ask her about issues concerning
nursing a newborn with ACC. She thought there might be
some loss of muscle tone and promised to follow up with
me when she was born and do everything she could.

My husband and I both attended her first aid class as
well. We learned a lot and had a good time doing so.
Learning how to help a choking toddler came in handy
for me more than once with my daughter’s oversensitive
gag reflex later on.

Birth Complications

At 34w4d, I left work for my 34-week appointment.
My blood pressure was sky-high, I was spilling
4+ protein, I had 4+-degree swelling, my reflexes
were very clonic, and I was gaining 10-12 pounds
a week in water weight. It seemed that I had
developed preeclampsia. My OB sent me to BSA for
a non-stress test and ordered immediate bedrest
“if they even let you leave the hospital.” They
didn’t.

The nurses freaked out a bit. Upon seeing my
blood pressure of 200/100, they put me in a bed
in a dark room with padded bedrails and forbade
me to get up to go to the bathroom or to watch TV
or to eat. After reiterating that I had driven
myself there and walked in myself, I convinced
them to let me up to go to the restroom and to
have a Subway sandwich for supper. That was my
last meal for about 4 days. They brought nursing
students in regularly to learn what clonic reflexes
were like. I was being pumped full of magnesium
sulfate.

My OB came by and asked if I still preferred to
have a natural delivery, or if I wanted to do a
c-section. He was honest in saying that the
c-section is easier for him, but that the natural
birth would do the best for the baby’s lungs.
Because I was already 34 weeks along, it was too
late to do the steroid shots. I still wanted a
natural unmedicated birth. He was going to contact
the pediatrician to ensure that she was okay with
that.

The OB came in in the morning and began the induction
at 8 or 9AM. My baby had no intention of being evicted
and after reaching the maximum level of Pitocin, they
had to start turning it off and then jacking it back
up again to make contractions happen. He broke my water
upon returning from a funeral. I had one or two mild
contractions that I could actually feel and then they
insisted on internal monitoring and an epidural because
they were afraid that pain would drive my blood pressure
higher. The first epidural did not work. The second did,
somewhat.

At about 8PM, I hit transition and had a wave of nausea
(despite having no food/drink for 24 hours). When I
rolled over out of reflex, the baby’s heart rate crashed
and pandemonium broke loose. I was immediately prepped
for a c-section. The nurses wheeled me down the hall
to the operating room. I was wheeled in yelling “I’M
NOT NUMB! I’M NOT NUMB!” In an effort to get her out,
I was shot full of local anesthetic in addition to a
bolus from the epidural. I could still feel a lot of
pressure and tugging and it was not a good experience.
It took three people to get her out because she was
tiny and was so low. (In hindsight, it’s also her
personality.) I never saw her or heard her. The
tugging stopped. The room was silent. I finally said,
“Is she out?” My husband said, “Yes.” I said, “Is she
breathing?” He said, “I don’t know.” Then she was
gone—whisked out of the room to the NICU.

At that point, I was hurting. The spotty anesthesia
as I was being put back together, the emotional shock
of not knowing if my baby was dead or alive, the lack
of sleep, the lack of food/drink, and the accumulation
of magnesium sulfate made me want to do nothing but
sleep and try to block it all out.

At some point later, I was back in a hospital room,
but I thought it was a different one. My eyes would
not focus. I had a serious sense of vertigo and had
difficulty staying awake. I woke up long enough to
ask if she was alive and my husband told me yes.

My Recovery

The pain button on the epidural pump was my best
friend for the next few days. Once it was removed,
the Pain Management team gave me a pill that I’m
pretty sure was hydrocodone. Again, despite my
asking about being able to be alert and ambulatory,
my eyes would cross, I would fall asleep in
mid-sentence, and I could not focus—much less
attempt to walk.

The NICU

My husband went to see our daughter in the NICU after
my surgery was over. She was in a frog’s-nest on
an open bed on CPAP and was stabilized. He was
able to record video of her briefly that he played
for me when I briefly awoke. That is how I first
saw my child—on a 3-inch camcorder screen.

The grandparents were allowed to go in to see her
that night as well. My mom went again first thing
the next morning and stayed there for about an hour.
She was encouraged to touch her firmly and sing to
her.

My wonderful nurse, took me to see her the next day.
I rode in a wheelchair and still could not make my
eyes focus. I recall noticing that she had my toes
and fingers and a lot of hair. I could not scrub in
and therefore did not touch her.

The next day, my husband, wheeled me down to see her
again. I was still so messed up from the medicines
that I was reasonably sure that they took me to a
different baby, but decided not to say anything.
I still could not make my eyes focus and had a hard
time paying attention.

The next day, I got away from pain medication and
switched to Advil. I wheeled myself to the NICU and
I held her for the first time.



A lactation nurse, came to see me in my room and
helped me get started pumping. I did that every
3 hours for the next 6 weeks.

I gave her her first 5cc via bottle, which killed
me because I was so committed to nursing.

The first time she nursed was an experience. The
lactation nurse on duty came to the NICU and helped
me get her latched on and things went amazingly well.
When she got tired, we stopped.

Due to her prenatal diagnosis of ACC, they did an
ultrasound of her head and found that to their
surprise, she did have a corpus callosum after all.
This left them puzzled about the reason for the
large ventricles.

They took her for an MRI one morning. I would
have liked for one of us to go with her, but we were
not given notice and found out after it was already
over. Along with our family, we were all awaiting
news of the MRI results. Family called daily looking
for an update.

The neonatologist came into our hospital room with
her nurse practitioner. The neonatologist waltzed
up to my hospital bed, where I was sitting and my
husband was in the chair. She immediately said,
“The news is not good.” I will never forget that
phrasing. She proceeded to tell us that our baby
had lissencephaly and would never walk, talk,
sit up, or even roll over. She said that our daughter
would suffer debilitating seizures and that an
EEG was already scheduled and would be read by
doctors in Dallas to see how severe the seizures
were already. We questioned the fact that she was
making periodic eye contact and even somewhat
smiling at times (we have photos). We were told
that that was due to overactive muscles. We
questioned the fact that we had not seen any
seizure activity and we were told that it was a
matter of time. She told us that her nurse
practitioner would print some information off
the Internet for us. My husband and I cried and
prayed together and decided to move forward
regardless and do the best we could. I had to
keep up on pumping and we tried to spend as
much time as we were allowed to with her. The
nurse practitioner returned later and gave my
husband a packet of information so that we
could read up on the condition.

Later, he looked at the packet of information.
It was printed off of the Internet. The first
thing on the page said, “If your child has just
been diagnosed with lissencephaly, this is NOT
for you.” It is for parents who have had time
to cope and understand the diagnosis who now
want more information. He read the information
and told me he did not want me looking at it in
my current state. He took it home.

With the news of lissencephaly, the pediatrician
who we had YET to see dropped us like a hot potato,
but did not tell us. We tried to make contact and
couldn’t get a call back. We eventually discovered
that a special-needs doctor was now our pediatrician
and was in fact taking over the neonatology side for
the most part as well. We were puzzled, as we had
never met him, or had any idea why he was now our
doctor. He and his nurse practitioner came to my
room to talk to us. They told us that they didn’t
care what the testing says—the important thing is
to focus on the baby and what she can do and what
issues she’s having. He also told us that the
original pediatrician had transferred us over to
him because he was a special-needs pediatrician.
We decided that we were comfortable with his
approach and that we liked his NP as well. One of
them continued to check in with us once or twice
a day.

Again, we were not told when the EEG was taking
place. We found out after the fact. The results
were normal—no seizure activity.

We had been told that she would be in the NICU
until about her due date (May 25, 2003). However,
on the sixth day, she began regaining weight and
was “nippling” okay (though her oxygen sats did
drop a bit while eating).

Our new pediatrician wanted us out of the hospital,
where she would no longer have to be a baby in
a box and where she could be cared for by her
parents. We agreed.

On the seventh day, our daughter roomed in with me in my
“hotel” room. I had serious trouble getting her to
latch on to nurse and we ended up using bottles
quite a bit.

I am immensely thankful for the lactation staff,
who not only helped me while in the hospital, but
also fielded tons of phone calls from me and allowed
me to come in for weight checks to see how much she
was eating. However, I do wish that nipple shields
had been discussed more thoroughly with me. I did
not realize the issues that they would cause with
supply, and I had no idea how to get her to quit
needing a shield to be able to nurse.

I exclusively pumped for the first 6 weeks because
latching was just not working and I could not handle
an additional sense of failure; I had to take Reglan
because my supply totally disappeared the day after
we came home from the hospital. At 6 weeks, she latched
on and refused to take another bottle after that. Ever.
She was 4 ½ months old before I was able to get her
latching and nursing without the shield, which cut
our nursing sessions down from a solid hour each time
to about 20 minutes. She was 8 months old before she
was really latching correctly, which meant that I
endured multiple rounds of blisters, cracks, thrush,
and mastitis. At 8 months, everything finally started
coming together, both of us knew what we were doing,
and it finally worked like things should have to begin
with.

At 5 months, we repeated her MRI. There was
“no sign of lissencephaly.” We will never know if
the first MRI was misread or what exactly happened;
we choose to view it as a miracle and give the credit
to God. The report also described “diffuse thinning”
of her corpus callosum and still-enlarged ventricles.
She has never had a seizure.



She began rolling over consistently at 5 ½ and
7 months. She sat up at 7 ½ months. She began crawling
backwards at 10 ½ months and forward right after her
birthday. She got her first tooth at 16 months. She
walked at 18 months. She knew about 40 signs by age 2
and began stringing spoken words together at about
age 3. She potty-trained at 4 ½. She has hit every
milestone late, but she has hit them.

She is now 6 ½ years old. We began occupational
therapy in May 2009 for ADHD-like sensory-seeking
issues, fine motor delays, and visual processing
delays. We recently repeated her MRI. She has
hypoplasia of the corpus callosum (“extremely thin”)
and her ventricles are still enlarged. In hindsight,
many of the issues that we had during her infancy
and preschool years are related to her very thin
corpus callosum.

I am immensely grateful for all that I have learned
from this child. You will not find anyone who loves
her more deeply or fiercely than I do.

We are homeschooling for the second year now. She
reads pretty well. Math has been a challenge, but
she’s doing better after a recent breakthrough.
She loves books, Bible stories, music, toy cars,
VeggieTales, cheese, butterflies, ice cream, and
Boston Cream Pie yogurt. Most of all, she likes
to MOVE. She is never still, whether it’s spinning
in the tire swing, jumping on the trampoline, or
cruising the house on roller skates. She talks
non-stop and sings well. She is learning to play
the piano and has a love for American history.
She is deeply sensitive and loves enthusiastically.

We are blessed to have her. When I think back to
that time on the table when I did not know if she
was dead or alive, it takes my breath away. When
I think of the vegetative child that the neonatologist
predicted, it makes me smile to realize what we were
“supposed” to have versus what we actually have.
We do not know what the future holds for her, but
we do know that it will be enthusiastic, it will
be spirited, it will be creative, and it will be
something that someone with a normal energy level
could never accomplish. God has BIG plans for her.



There are many different stories and outcomes of
ACC and Moms-To-Be.

I welcome every story.

Do you:

Have questions?
Need support?
Want information?
Have encouragement to give?

Do you want to share your own story?

If you do, please leave a comment below or you can E-mail me:
hope@aracnet.com

Want to talk to other moms who have been there and
understand? Join the ACC Listserv e-mail support group.

I hope to continue sharing more of these ACC and Moms-to-Be
stories out in the open in an effort to inform, encourage,
support and help other moms (and dads) out there who are being
told that their baby in utero has agenesis of the corpus
callosum.

This ACC and Moms-To-Be section will always remain open
and available to anyone who would like to tell their story.